transition to adulthood through coaching and empowerment

Conditions: Juvenile Idiopathic Arthritis; Inflammatory Bowel Diseases

Summary: pediatric patients with juvenile idiopathic arthritis or inflammatory bowel disease who are preparing to transition into adult care face many unique challenges, and, to date, there is no comprehensive and implementable model of transition care in canada or the united states. these patients, in addition to the systemic inflammatory nature of their diseases, are also in a period of immense psycho-social stress due to changes in school structure, employment, and general psycho-social growth. a poorly managed transition can have adverse effects on the quality and experience of care as well as contribute to poor disease outcomes including increased morbidity and even mortality. the goal of this study is to determine the feasibility of using a transition coach intervention to help patients in their transition from pediatric to adult care.

this pilot, feasibility study aims to investigate a new approach to transition from pediatric to adult healthcare for juvenile idiopathic arthritis or inflammatory bowel disease patients. the study population that will be recruited are 16-17-year-olds with juvenile idiopathic arthritis or inflammatory bowel disease seen in pediatric rheumatology or gastroenterology clinics. upon consent, the patients will be asked by the study coordinator about their preferred method of communication (email or phone). participants will then be randomly allocated to the transition coach intervention or the control group (standard of care) using the robust randomization app using variable permuted block randomization (4 or 6) and a 1:1 allocation ratio. all participants will receive the youth transition roadmap (standard of care) which discusses 5 domains of healthcare transition; self-advocacy, medication management, general health, lifestyle issues and future planning related to education and vocation. the study coordinator will then invite the patients to complete a baseline study questionnaire on the online redcap secure platform. this baseline questionnaire will gather information to describe our study population including: age, sex, disease type, age at diagnosis, family history, comorbidities and education stream. the investigators will also collect information regarding 'attitude towards transition' and 'feeling ready' for transition using questionnaire. once the patient has given informed consent and baseline demographic data has been collected, patients will be asked to complete the following questionnaires using redcap: i) pedsql™ 4.0 generic scale (18-25 year-old) to measure physical, emotional, social, and school functioning; ii) patient global assessment, a measure of disease activity; and iii) patient-reported outcomes measurement information system (promis®) self-efficacy outcomes for chronic disease including self-efficacy for managing daily activities v1.0, emotions v1.0, managing medications and treatments v1.0, social interactions v1.0, symptoms v1.0, and informational support v2.0. individuals in the transition coach intervention group will meet with the transition coach six times and with a clinical psychologist two times over the course of six months. the transition coach intervention will include 8, 1-hour sessions over 6-months. the transition coach will independently meet one-on-one with each youth using an individualized, patient-centred approach beginning with an introductory session, followed by 5 sessions covering each topic in the youth transition roadmap. upon completing the transition coach intervention, two groups of 4-6 participants each will be randomly selected to participate in an emotional mapping exercise to share their experiences/satisfaction with the transition coach intervention. quality improvement methods will be employed by hamilton health science's patient experience office to yield an emotional map to inform modifications to the intervention for a future study

Eligibility criteria:
inclusion criteria: * 16-17-year-old juvenile idiopathic arthritis or inflammatory bowel disease patients * can communicate in english * have access to a phone (or other communication technology such as a laptop), * are available over the 9-month follow-up period exclusion criteria: - cannot communicate in english

Keywords: transition in care empower youth in their transition to adulthood